izzyleung Posted June 5, 2012 Share Posted June 5, 2012 Hi everyone, I am writing with not-so-good news. My father, who was dx with Limited SCLC in october had his latest round of scans which show 2cm nodule in his liver and nearby lymph nodes. It's likely the SCLC has metastasized. The duration since his first standard chemoradiation treatment was a short four months, it's very very discouraging. I am prepared for the worst and feel very sad for my father who has to go through this. We were confident that the treatment was going to get him better for at least a year or two, but I did not think he may end up on the other side of the bell curve. Doc recommended second line chemo of topotecan w/ irinotecan. Has anyone had that and was it successful? We are also looking for clinical trials but there do not appear to be much options out there. Did anyone had any experience or insight into the SCLC clincial trials in this country? We live in NY area and we are trying to get him into Memorial Sloan Kettering. Does anyone has experience with that? The referral process is quite slow which is very frustrating as the wait time for the initial appointment takes up a whole week and I am so afraid that waiting it out cuts his chances while the second opinion may suggest the same 2nd line treatment. Given how rapidly these cells can grow and even days will matter in terms of effectiveness of treatment, I am really torn and pray that MSKCC has better focused treatments. At this point, I have so many questions, so much concern and anxiety. My father appears to be OK, but I am so scared of the next crash and the months to come. We pray the next round of treatment will buy him more time and that's all we ask for. Do we have any hope that the second line treatment will work and give him some longer response time? Any success out there? I am starting to realize that cancer is such an individualized disease and everyone reacts to treatment differently. I am convinced that he's having some really really bad luck as he appears to be healthy prior to all of this and since dx, every news we got was the worst kind... AT least I still have this forum to express my thoughts and emotions, it's hard for me to imagine what goes through in his mind and what I can possibily say to make him feel better and stronger other than continusly reassuring him and making him feel love and support. Thanks for listening everyone izzy Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 5, 2012 Share Posted June 5, 2012 can not help with to much medical but this might help find something.. http://clinicaltrials.gov/ also if you are a member over at Grace Dr West may be able to help. He is a LC oncologist in Seattle that takes care of our medical questions and this is his link. His services to us are free!! http://cancergrace.org/ He may know of something that might help also... Hugs and Prayers !! that is the best I can do right now!! Quote Link to comment Share on other sites More sharing options...
Petunia Posted June 8, 2012 Share Posted June 8, 2012 I am very sorry to hear about your bad news, however, there is still hope out there. You said you were from the NY area, as am I. I have my mother getting treatment at Columbia with a Dr. Stoopler (She was dx with ex. scls in February and is just about to start her 5th chemo and is on her 11th radiation treatment for her bones.) He is very well known for lung cancer. I also know how Sloan can take forever to get an appointment. I have talked to several people during my mother's chemo treatments at Columbia who are Dx the same. One said that Sloan would not even take on their "case" because it was not unique enough and the other said that Sloan's treatments are the same as Columbia. Also, if you get into Columbia and a clinical trial comes along associated with Sloan, many times Columbia's patients are also included. You can email me for my information as a referral to Dr. Stoopler. He is a wonderful doctor with a great bedside manner and he is "up" on all the new treatments. ..as you said "your dad is okay now." I know from my mother that what keeps her spirits up is that her loved ones treat her the same and not as though she has limited time left here on earth. I am sending my good thoughts your way and do not give up. Quote Link to comment Share on other sites More sharing options...
Joppette Posted June 8, 2012 Share Posted June 8, 2012 Thanks for the update Izzy. I don't know the answers either, but would suggest, as Randy did to take your questions to Cancer Grace. You can create an account there like you did here. In fact use the same "handle" you use here so us regulars there will recognize you! The site is very user friendly. Just post your questions, and ask for a Doctor's perspective and they will answer. It is http://www.cancergrace.org I think Randy put that in here earlier too. Wishing you the best. Do keep us updated at least so we can pray! Judy in MI Quote Link to comment Share on other sites More sharing options...
cat127 Posted June 8, 2012 Share Posted June 8, 2012 A quick search of clinicaltrials looking for SCLC and NY hit on a few drug trials. Such as this one: http://clinicaltrials.gov/ct2/show/NCT0 ... ANY&rank=1 There are a few other drug trials there too. I wonder if trying to call the contact numbers on the trials is another avenue to explore for getting a foot in the door at MSK? I have zero experience with that, just sort of thinking out loud. Quote Link to comment Share on other sites More sharing options...
izzyleung Posted June 9, 2012 Author Share Posted June 9, 2012 Thank you everyone for the support and kind words, they mean a lot to me in helping me getting through this difficult journey. Petunia, I will PM you for the referral. At this point, we are going to explore all options. Thanks! Quote Link to comment Share on other sites More sharing options...
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